Tuesday, June 24, 2014

For today.....

At this moment, I’m quietly rejoicing. No one noticed the load was lighter on my shoulders as we left the clinic today, nothing looked very different, except for today.....we have been given a bit of a reprieve. When the sleep clinic doctor reviewed Peter’s sleep study on Cpap, she feels he is stable at this point. For right now...today....one doctor is saying that Peter doesn’t need jaw distraction.  We know he needs it at some point, but that point just got moved down the line a bit more....

Like swimmers who have well developed shoulders sculpted through hours of practice.....our “taking it one day at a time” muscle gets a workout. a rough, tough, workout that is exhausting and difficult at times. For someone like me who wants to peek ahead at what’s coming down that there pike, well, it has been replaced, (slowly)
“For today, all is good.” 
Even a messy office shelf will not get me down! 

Peter is healing nicely from his surgery. His airway, while tricky, is stable. He is off his pain meds less than a week after a big surgery. He is smiling and almost back to his perky self. 
For these things, I am eternally grateful. Tomorrow will take care of itself, with the Grace necessary for the difficulties it may bring..... I’ll snatch it all up when the time comes, but for TODAY....we breathe easier....we offer up thanksgiving.....our joy is not dampened by the “what if’s” of tomorrow.

God is good, all of the time. 

Tuesday, June 17, 2014

So here we go.....number 17.....

Cue Rocky music. My sweet Pete is going in for yet another surgery tomorrow. This will make 17 surgeries. He wears his scars proudly, like a warrior out to conquer. I’m not sure where he got all of this competitive stuff, ahem....

See how he claimed the box? I believe he’s almost obstructing his trach with the cheek action going on, but hey, who’s worried about a little thing like breathing when you got a box to scale?

Through the years, I’ve seen my kids through a lot of surgeries, a lot of physical pain, a lot of hard muck. There is much to learn with having special needs kids.....the medical stuff, the diagnosis specific information...the stand up and advocate for your child stuff.

But the most important lesson of all is surrender...we are talking the lay Isaac on the slab and not knowing if the ram is there or not to take his place kind of surrender. 

Can I admit that I struggle mightily with that? Many would think from looking at us, we have this all locked down. We are well seasoned athletes in this arena. (Do NOT look at my upper arms!)  Repetitive actions often render a little “wisdom,” like remembering to wear comfortable, old clothes on surgery day, or not forgetting my phone charger, or bringing my own bottled water because it’s so expensive at the hospital, and getting Lily’s tiny blankie and Peter’s iPod and pillow for the ride home, and whatever I do, pack the tiny crochet hook to pick up dropped stitches on my knitting needles!!

We can pack pretty efficiently for surgeries after the dozens we have endured over the years.

But surrender? It’s the unpacking that gets me. I start anew with every single surgery, every single kid, every single time. Surrender is a verb for a reason--it’s a very active, wrestle-demons-of-anxiety-to-the-ground verb.  Like breathing itself, it is necessary to survive and thrive in this world of special. I have to actively choose to surrender.....and believe me, that’s often as exhausting as running a 5K.

 I should say I PRESUME it is as exhausting as a 5K run since I’ve not actually run a consecutive amount of measurable distance in my life...other than the time I heard Gabe screaming bloody murder and I was eight months pregnant, running to him as he laid crumpled in the gravel with serious road rash on his face and chipped teeth...that counts as some kind of sprint event, right? 

Special needs parenting is sometimes having the author of lies whisper in my ear, “Can you really trust Him?” I often whimper back, tired and rattled by yet another difficult scene, ”Yes, I can trust Him, so beat it.” Other times, strengthened by recent victories and my own doubting Thomas moments of seeing and touching His wounds, I stay calm and stick my fingers in my ears. It’s better not to feed the beast. 

My faith is the size of a mustard seed, held in a trembling, outstetched hand. But my eyes have been conditioned by this life of mountain climbing to always be searching and looking for the One who is Love, to lock my gaze and my resolve on Him.  Surrender: verb, an act of my very imperfect will....over and over and over. Sounds like love, eh?

Please pray for this amazing warrior boy. I know it’s the faithful prayers of so many of you that prop us up for the mountain climbing done in surgery waiting rooms and floors of recovery.